My Wonderful Nightmare

Erin Higgins was diagnosed with ovarian cancer at 31 years old. During the next two and a half years, she kept journals and worked with holistic health practitioner Alma Lightbody. After her death, Lightbody followed Higgins’ wishes and compiled the journals into the new memoir “My Wonderful Nightmare: Spiritual Journals Inspired by Cancer.”

Readers will discover with Higgins her shocking cancer diagnosis and face with her the questions about her very existence. Readers will also see Higgins’ arguments with herself about her spirituality and her life.

An excerpt from “My Wonderful Nightmare”:

“We’ve never been taught to listen to our body and it’s tragic. I somehow knew the results of the surgery before they told me. If I had been more in tune with my body I would have known earlier. I hadn’t paid attention and didn’t know how.”

“There is a lot to learn about life and death and everything in between,” Lightbody says. “Many people never reach the depth of inner understanding that Erin shares as she faces the beast head-on.”

“My Wonderful Nightmare”
By Erin Higgins & Alma Lightbody
Trafford Publishing

Softcover | 6 x 9in | 196 pages | ISBN 9781425187255
Available at Amazon and Barnes & Noble

Follow this link to read more about it. 

PapGene Test for Ovarian Cancer Detection

News about a Pap smear test to detect ovarian cancer has spread quickly across the internet in the last couple days. Researchers from John Hopkins published the study about it in Science Translational Medicine.

But what does this actually mean?

A pap smear occurs during a woman’s yearly gynecological pelvic exams. Usually, pap smears are performed to detect irregular cells and potential cervical cancer. The doctor or nurse practitioner scrapes a little brush across the cervix to collect cells, which are stored in a vial to be examined under a microscope. The Pap Smear is no longer a smear these days, but is a liquid-based test to check DNA for the HPV virus, which can cause cervical cancer.

So how can this help to detect the elusive ovarian cancer?

Apparently cells flake off ovarian tumors or the uterus’s lining. They float down to rest in the cervix. Although they’re also too rare to recognize under a microscope, they can’t escape a DNA test. Detected gene mutations reveal that cancer is present. This test is called the PapGene, which is named after Georgios Papanicolaou, who revealed his “Pap” smear in 1943. The test costs about $100 right now. If it becomes mass produced for commercial use, it would become cheaper.

That is more good news for us.

Being able to detect ovarian and other endometrial cancers early is a great achievement because over 22,000 women in the United States are diagnosed with ovarian cancer each year. Of that number, more than 15,000 die.

However, there’s a little hiccup.

Because the discovery is still in an early stage of research, we can’t expect any immediate changes to our yearly exams. It will take years of additional testing to prove the findings. The next step is to test it on hundreds of women—both with and without cancer diagnoses—instead of the dozens that the initial study used.

Keep your fingers crossed.

References:

1 - http://www.washingtonpost.com/national/health-science/a-pap-test-for-ovarian-cancer-scientists-retool-cervical-cancer-test-to-hunt-other-tumors/2013/01/09/f8c2b694-5a8d-11e2-b8b2-0d18a64c8dfa_story.html

2 - http://www.msnbc.msn.com/id/50410889/ns/health-cancer/#.UPAmMeRbaSo

Beautiful and Empowering Folk Art

Some days, we need something to make us smile. Something to lighten our moods. Something we can get to help ourselves and others. J. C. Spock does just that with her art collection on Etsy. Check out her amazing artwork below, and be sure to visit her site.

On her Etsy page, she writes:

I have collaborated with FORCE (Facing Our Risk of Cancer Empowered) and am working with them on a national fundraising effort and various projects (resulting in over $5K donated in free/discounted product). I have also donated over $650 from your purchases of Brave Girl, Sisterhood Girls and Empowered Girls merchandise since Sept. 2010. Thank you for your support!!

Ovarian Cancer Awareness Organizations

Many times when you’re looking for something online, it seems to be buried in a bunch of unrelated posts. In the case of ovarian cancer awareness, organizations are either front-and-center or hidden by fundraising benefits, little merchandise companies, and movements among friends and communities.

If you’re looking for organizations that help to raise awareness of the disease, read through the list below. You can visit any of their sites and learn how to donate to research or help with the cause to raise awareness.

• Ovarian Cancer Awareness.org
• The National Ovarian Cancer Coalition
• Ovarian Cancer National Alliance
• Ovarian Cancer Awareness Foundation
• St. Louis Ovarian Cancer Awareness
• Ovarian Cancer Symptom Awareness.org
•  The Greater Newburyport Ovarian Cancer Awareness (GNOCA) Group
• Turn the Towns Teal
• Teal Ribbon Comedy
• Why Teal?

Facts About BRCA1 and 2 Mutations

Mutations in the BRCA 1 and 2 genes aren’t just causing breast cancer. Women who discover that they carry these genes are 80 percent more likely to develop breast cancer, and 40 percent more likely to develop ovarian cancer. With that knowledge, many women become “previvors” by undergoing double mastectomies (removing both breasts) before being diagnosed, or removing both ovaries.

There are a few things you should know about the BRCA genes.

• A woman who has inherited a harmful mutation in BRCA1 or BRCA2 is about five times more likely to develop breast cancer than a woman who does not have such a mutation.
• Not all mutations are harmful. They can be beneficial or neutral, with no obvious effect.
• Harmful mutations can cause cancer before menopause.
• Women with harmful BRCA1 mutations may increase the risk of developing cervical, uterine, pancreatic, and colon cancer.
• Women with harmful BRCA2 mutations may increase the risk of pancreatic, stomach, gallbladder, and bile duct cancer, as well as melanoma.
• In the general population, 14 percent (14 out of 1,000) of women will develop ovarian cancer. However, the genetic mutation raises the statistic to 15-40 percent (150-400 out of 1,000) of women who will develop ovarian cancer.
• Not every woman in families that carry a harmful BRCA1 or BRCA2 mutation will develop cancer.
• Not every woman who has a harmful gene mutation will develop breast and/or ovarian cancer.
• Not every cancer in such families is linked to a harmful mutation in one of these genes.
• Men can be carriers of the mutations and their children can inherit them.
• Men can also be affected by the mutations and may develop breast cancer.
• Men with harmful BRCA1 or BRCA2 mutations have an increased risk of breast, pancreatic, testicular, and early-onset prostate cancer.
• Mutations in several other genes (TP53, PTEN, STK11/LKB1, CDH1, CHEK2, ATM, MLH1, and MSH2) have been associated with hereditary breast and/or ovarian tumors.

Click here for more information.

Video reference: http://www.everydayhealth.com/breast-cancer/the-breast-cancer-gene-is-it-better-to-know-you-have-it-or-not-6778.aspx

Understanding Yourself Through Others

To know your body is to love your body, and doing just that can save your life. The importance of knowing your body and when it’s doing something strange cannot be stressed enough. But you also have to know what it is you should be looking for. Unfortunately, ovarian cancer is one of the most difficult of all cancers to detect. Fortunately, that does not mean you can’t detect it.

Four of the most common symptoms of ovarian cancer are:

1. Bloating
2. Pelvic or abdominal pain
3. Trouble eating or Feeling full quickly
4. Urinary urgency or frequency

If you’ve noticed any of these symptoms or think you may be experiencing them, don’t be afraid to contact a doctor. Although it might be scary to discover your diagnosis, the sooner you do, the better off you are! 

And remember, if you are diagnosed, you are not alone! A woman’s risk in developing ovarian cancer in her lifetime is 1-in-71. Thankfully, there are millions of survival stories and the numbers are only rising! 

Check out Ovations for the Cure’s “The Whisper Network” for the different stories of others struggling with ovarian cancer and, if you’re feeling brave, share your own!

The Controversy Around the Gilda Club

Within the past week, the internet has been in an uproar about the Gilda Club Madison changing its name because younger patients today don’t recognize the esteemed SNL actress’s name. The club will phase into the new name of Cancer Support Community Southwest Wisconsin by January, which will help to encompass a wider area. That particular branch is the fourth affiliate within the global organization to make the change.

Gilda Radner was a comedian who performed on Saturday Night Live during the ’80s. She is best known for her original characters of Roseanne Roseannadanna, Emily Litella and Baba Wawa. And, she died from ovarian cancer in 1989 when she was 42 years old. Before her death, she did not keep quiet about the disease and instead put a very public face to it.

The Madison club is just a branch of about two dozen national affiliates belonging to the larger Gilda's Club, which is named after Radner's famous remark that compares cancer to a membership in "an elite club I'd rather not belong to.” The organization helps to provide emotional support, cancer education and wellness activities for cancer patients and their families. The Madison chapter was just established in 2008. Gilda’s Club Worldwide, which is based on the East Coast, and the Wellness Community, where Radner got support on the West Coast after she was diagnosed with ovarian cancer in 1986, slowly grew together and joined forces in 2009. This means that the name change to Cancer Support Community makes a little sense. The other two affiliates to adopt a name change were North Texas and Milwaukee.

Executive Director of Gilda’s Club Madison Lannia Syren Stenz had this to say about the name change.

“...[O]ur college students were born after Gilda Radner passed, as we are seeing younger and younger adults who are dealing with a cancer diagnosis… We want to make sure that what we are is clear to them and that there’s not a lot of confusion that would cause people not to come in our doors."

In response to all of this, critics on social media have said “Shame on you.” They claim that changing the name suggests that Gilda’s legacy is not worth protecting, despite the fact that without Gilda’s celebrity status, ovarian cancer might not have received the attention it did. People have also claimed that changing the name is an insult to Gilda’s life, memory, and work. In addition, other branches—including New York, Grand Rapids (Mich.), and the national organization—have come out and staunchly proclaimed that their names will not change.

You can read more about the controversy below:

• http://boingboing.net/2012/11/27/gildas-club-name-change.html
• http://gawker.com/5963758/cancer-support-group-named-after-gilda-radner-changing-its-name-because-young-patients-dont-know-who-gilda-radner-is
• http://todayhealth.today.com/_news/2012/11/29/15544026-shame-on-you-backlash-builds-over-gildas-club-charity-name-change?lite
• http://www.globaltoronto.com/gildas+club+name+change+sparks+online+protests/6442762418/story.html
• http://host.madison.com/news/local/health_med_fit/gilda-s-club-changing-name-as-fewer-know-namesake/article_0893171c-53c8-50bd-900f-6381aee41f71.html